Patient and provider perceptions of a community‐based accompaniment intervention for adolescents transitioning to adult HIV care in urban Peru: a qualitative analysis

Abstract Introduction Adolescents living with HIV (ALWH) experience higher mortality rates compared to other age groups, exacerbated by the suboptimal transition from paediatric to adult HIV care, during which decreased adherence to antiretroviral therapy (ART) and unsuppressed viremia are frequent. Care transition—a process lasting months or years—ideally prepares ALWH for adult care and can be improved by interventions that are youth‐friendly and address psychosocial issues affecting ART adherence; however, such interventions are infrequently operationalized. Community‐based accompaniment (CBA), in which laypeople provide individualized support and health system navigation, can improve health outcomes among adults with HIV. Here, we describe patient and provider perceptions of a novel HIV CBA intervention called “PASEO” for ALWH in Lima, Peru. Methods PASEO consisted of six core elements designed to support ALWH during and after the transition to adult HIV care. During 2019–2021, community‐based health workers provided tailored accompaniment for ALWH aged 15–21 years over 9 months, after which adolescent participants were invited to provide feedback in a focus group or in‐depth interview. HIV care personnel were also interviewed to understand their perspectives on PASEO. A semi‐structured interview guide probing known acceptability constructs was used. Qualitative data were analysed using a framework analysis approach and emergent themes were summarized with illustrative quotes. Results We conducted five focus groups and 11 in‐depth interviews among N = 26 ALWH and nine key‐informant interviews with HIV care personnel. ALWH participants included males, females and one transgender female, and those with both early childhood and recent HIV infection. ALWH praised PASEO, attributing increased ART adherence to the project. Improved mental health, independence, self‐acceptance and knowledge on how to manage their HIV were frequently cited. HIV professionals similarly voiced strong support for PASEO. Both ALWH and HIV professionals expressed hope that PASEO would be scaled. HIV professionals voiced concerns regarding financing PASEO in the future. Conclusions A multicomponent CBA intervention to increase ART adherence among ALWH in Peru was highly acceptable by ALWH and HIV programme personnel. Future research should determine the efficacy and economic impact of the intervention.


I N T R O D U C T I O N
HIV is a manageable disease and mortality should be rare; however, adolescents aged 10-19 living with HIV (ALWH)about 1.8 million globally [1]-experience worse health outcomes than other age groups. HIV is the second leading cause of death among adolescents aged 10-19 years [1][2][3], and among youth aged 15-19 years, HIV-associated mortality is rising [4]. For ALWH, becoming an adult is an especially precarious period: in addition to biopsychosocial changes, ALWH also transition from paediatric to adult HIV care and are frequently "lost in transition," especially in low-resource settings [5]. Care transition is a process lasting months or years, and, if unsuccessful, poses risks to HIV care engagement, retention [6] and mental health [7]. Ideally, ALWH are virally suppressed

M E T H O D S 2.1 Participants and procedures
During 2019-2021, we pilot-tested a CBA intervention called "PASEO" implemented by the community-based organization Socios En Salud (SES) in Lima. Building on previous ART adherence research among Peruvian ALWH [34], we recruited ALWH aged 15-21 years; commencing or taking ART; preparing to transition to adult HIV care; and residing in Lima. ALWH disengaged from adult HIV care were also eligible. Recruitment occurred from October 2019 to January 2020 at three public hospitals providing HIV care where clinicians consecutively referred eligible ALWH to study staff. The PASEO intervention and feasibility results are detailed elsewhere [35]. Briefly, PASEO consisted of six core components ( Figure 1) delivered over 9 months (a 6-month intensive phase followed by a 3-month step-down phase) by paid entry-level or lay-health workers: 1. Health system navigation and clinic visit accompaniment (at least monthly); 2. Social support groups (monthly); 3. Screening and referral to mental health services; 4. Resolution of acute needs (e.g. psychosocial, medical, housing and transportation); 5. Health education and skills-building (monthly); and 6. Individualized adherence support, including directly observed therapy (DOT) (as needed). PASEO addressed individual circumstances, with the goal of building ALWH's knowledge, skills and confidence to self-manage HIV care. For example, if an ALWH was experiencing unstable housing, housing support was coordinated (core component 4). Likewise, for ALWH experiencing mental distress or substance use issues, linkage to care was provided (core component 6).
Thirty ALWH naïve to SES participated, comprising those with early childhood or recently acquired HIV, cisgender males and females, males identifying as homosexual and a transgender female. When the SARS-CoV-2 (COVID-19) pandemic required mandatory stay-at-home orders (March 2020), participants had received between 1.4 and 5.3 months of the intervention, after which we implemented virtual delivery of the intervention (detailed in [35,36]). Essentially, all previously in-person study activities were conducted via telephone/videoconferencing (participants were provided data credits). For example, ALWH received weekly accompaniment telephone calls to coordinate ART collection (e.g. support navigating COVID-19 transportation restrictions). For ALWH receiving DOT, video calls were implemented. Secure virtual spaces were harnessed to continue the support groups (core component 2) and promote participants' interaction, socialization and education which were stressed during the acute phase of COVID-19 [34].
An ALWH-comprised Youth Advisory Board guided PASEO, and ethics approvals in Peru and the United States covering the study intervention, including qualitative data collection, were obtained at enrolment. Written informed consent was obtained from adolescents aged ≥18 years and from guardian(s) of adolescents aged <18 years with informed assent. Consent was waived for adolescents aged <18 years without guardians; they provided informed assent.

Data collection
Thirty ALWH participated in PASEO, and all were invited to participate in a focus group or in-depth interview at intervention/study completion. MW, PASEO study coordinator and nurse trained in qualitative methods, collected the data in Spanish. Focus group and individual in-depth interview composition was determined a priori, arriving at five different participant experiences/types: A. ALWH who regularly participated in all PASEO intervention components; B. ALWH who did not regularly participate in all PASEO intervention components; C. Pregnant ALWH; D. ALWH who transitioned from paediatric to adult care during PASEO; and E. ALWH initiating ART just before PASEO. In-depth interviewees were selected by convenience to gain a deeper understanding of participant experiences. Additionally, we conducted key informant interviews with HIV care personnel (physicians, peer counsellors, psychologists and programme officials) who referred adolescents to PASEO and providers from whom PASEO participants received services. The focus groups, in-depth and key-informant interviews followed semi-structured interview guides informed by eight key intervention acceptability focus areas: acceptability, demand, implementation, practicality, adaptation, integration, expansion and limited efficacy [37] (Table 1). Prior to the focus groups and interviews, participants were asked to find a private, distraction-free space, and reminded to prevent others (e.g. household members) from hearing or seeing interviews; headphones were provided to participants for increased privacy. The study staff was likewise situated in a private space. Data were collected via secure/HIPAA-compliant videoconferencing; for three participants, interviews occurred in real-time, via encrypted text messages because they relocated outside Lima and lacked internet. Video was used whenever possible; however, cameras were switched off during poor audio quality. Procedures for maintaining research continuity during COVID-19 were followed, including environmental issues (discussing/ensuring distraction-free privacy), using professional attire; and readi-ness to address technical issues [38]. Interviews and focus groups lasted approximately 60-minutes, were recorded, transcribed verbatim (for interviews conducted via chat, the chat transcript was the source document) and analysed using Dedoose [39].

Data analysis
Data were coded by MW and BN using framework analysis [40], selected for its step-by-step analytical approach and usefulness in studies with specific questions among a pre-defined sample within a limited timeframe [41]. Five transcripts were independently coded using a preliminary codebook derived from the interview guides, adding de novo codes as needed. Separate codebooks were created for ALWH and HIV personnel. Next, the coders and JG compared the five coded transcripts and harmonized coding by consensus after which the remaining transcripts were coded. Reports were generated for all codes, and related text across the transcripts was extracted into matrices for granular analysis. Finally, crosscutting themes were reported using illustrative quotes translated into English by JG and validated by MW. The Consolidated Criteria for Reporting Qualitative Data Checklist (COREQ, Additional File S1) was completed. • What did you like most about PASEO?
• What did you like the least about PASEO?
• What is your opinion and/or experience with the: • . . . support provided to enrol in health insurance?
• . . . home visits by the health promoter?
• . . . support in managing the side effects of medications?
• . . . the duration of the intervention?
For healthcare personnel: • What are your general impressions of the intervention?
• What did you like most about the intervention?
• What did you like the least about the intervention?
• What is your opinion about the duration of the • What happened that prompted you to stop participating in some project activities, or continue with medications and/or medical appointments in the adult health system? During the study, as we all know, the "coronavirus" or "COVID-19" epidemic began, which forced us to stay at home. During that period, you received calls from our team. We also offered internet chats among other things.
• How was the impact of coronavirus on your ability to maintain good adherence of medications? Was your schedule changed?
• What do you think of the new strategies we made during the epidemic? Did you like them? What do you recommend us to do or not to repeat in the future if you face a similar situation?
• How would we be able to improve the intervention?
For healthcare personnel: • How do you think the impact of coronavirus was for adolescents to maintain good adherence of the medications?
• Did they talk to you about the study and/or the difficulties they encountered?
• Based on your experience with COVID-19, would you recommend some additional factors that we should consider for the future? • What concerns do you have?
• What would need to be changed to make it more feasible to scale?
• What information would you need to see before making a decision on adopt this intervention at the programmatic level?

Participant characteristics
Twenty-six ALWH participated in a focus group or in-depth interview (n = 15 and n = 11, respectively); n = 4 participants were non-responsive to invitations to participate. Fifteen of the 26 participants were male, of which 14/15 identified as cisgender; one adolescent assigned male at birth identified as transgender. Eighteen ALWH acquired HIV during early childhood and 16 had a parent die from HIV ( Table 2).
Nine key-informant interviews were conducted with HIV programme personnel: three physicians, one nurse, two peer counsellors, two psychologists and a group home coordinator.

Qualitative findings
For ALWH, qualitative data are organized under two domains,

Domain 1, Experiences during PASEO: Overall acceptability
Likes. Overall, participants were positive about PASEO, reporting a sense of camaraderie. One participant stated, "If I had not [enrolled in PASEO], I would still be without treatment; of that, I am sure" (FG-A, female, 22, EC). Another participant summarized their experience by saying, "When I think of PASEO, the three words that come to mind are: community, teaching, help. Teaching because they taught us many things, things that I didn't know. Community because the program connected us with other people just like us" (FG-B, female, 19, EC).
ALWH emphasized benefitting from social support; one participant said PASEO had arrived at a critical point in their life: ". . . to be honest, I could say that I was totally lostdisoriented-and I didn't know how I was going to do it. Sometimes, I got so low that I felt horrible, but knowing that I had someone who supported me, that helped me, emotionally more than anything, that was what I needed most at that time." (FG-E, male, 19, recent) PASEO reduced social isolation, wherein new acquaintances were non-judgemental, and anything could be discussed without fear: Recommendations for a longer intervention duration were often framed as having more time to form/maintain social bonds with other participants; some expressed sadness that PASEO ended: ". . . thinking about being close to finishing the project really affects me a lot, because I love the meetings that we have. I listen to everyone and compare myself to each person, and I realize that I'm not the only person who has suffered or had those thoughts, and I like that." (FG-A, female, 22, EC) Another participant expressed, ". . . the end of the project is painful, and it's a little sad. But the truth is that the times that we've had have been really, really good" (FG-A, male, 22, EC).

Domain 2: Experiences with the six PASEO core components
Component 1-Health system navigation and clinic visit accompaniment. Participants praised the support from the health promoters ("promotora"), with three interrelated themes emerging: immediate assistance and training; attenuating prior negative experiences with the health system; and ongoing, trustbased working relationships. This participant discussed learning how to make clinic visit appointments independently: "[My promotora] was like a guide. For example, with the [health insurance program] she told me, 'Look, you have to be there early, you have to be persistent, and explain your situation well.' When it was time to make appointments [. . . ] she made me do it so that I would know what to do. Then if they didn't give me the appointment or if I couldn't make the payment, she would show up and fight with who she needed to get the appointment." (FG-A, male, 22, EC) Accompaniment appeared to buffer against previous bad experiences with the health system, restoring respect by health personnel: ". . . [in the hospital] everyone treated me really poorly the several times that I went alone. I recently went for a family planning visit, and the doctor treated me as if I was from another world. But when you have company, they respect you a little more" (FG-B, female, 19, EC). A common view was that community health workers were "more" than project staff; they were trusted friends, "I am very grateful because [my promotora] was there with me even though I refused to go back to my treatment. She was there with me until I became undetectable, and I owe it all to her because she was there not only as a worker, but as my friend" (FG-A, female, 22, EC). Component 2-Social support groups. Participants valued PASEO's support groups; however, there were disparate views on group composition. Some felt that groups comprised of all ALWH (regardless of sex, gender and HIV acquisition route) was a strength because they could learn from others with similar but different experiences: ". . . I learned a lot, like at least one thing I feared was not being able to have a baby, and there I learned that I can have one, because there were several guys, several girls [diagnosed with HIV] that had a baby" (IDI-E, male, 20, recent).
Participant: "I liked how [the groups] were, I liked the group that I was in. We had great conversations, and we became friends." Interviewer: "So [you liked the] varied groups, with men, women, vertical transmission, or others?" Participant: "We're all the same." (FG-B, female, 19, EC) Conversely, some preferred grouping ALWH with similar experiences was beneficial, for example, those initiating ART: ". . . for me, it would have been a little better if it had been the same people, those like me, to see that they were going through the same thing. Those that had just started treatment and things like that. Then, there'd be more things we have in common because, I don't know, you get to help them faster and they can help themselves too." (FG-E, male, 19, recent)

Component 3-Screening and referral to mental health services.
ALWH unanimously praised mental wellbeing support, often in the context of personal growth and acceptance of HIV: For one participant, DOT-and the experience of being "confronted" by the health worker for non-adherence-was framed as support: ". . . I was very forgetful, I forgot to take my pills, I forgot my appointments, I forgot everything. [. . . ] More than anyone, the lady [from PASEO] helped me because she yelled at me every time I forgot, well she chided me. She would ask me why I forgot, and she chided me every time I forgot. I felt that she cared about me more than anyone else, more than my family." (FG-B, female, 19, EC)

Domain 1: Opinion of PASEO
Overall acceptability-Improved contact with the HIV care system. HIV programme personnel similarly spoke positively about PASEO. One observation was that PASEO kept ALWH engaged in HIV care, addressing a health system gap: "We've heard good things about the project, from participants' family members, and we've also seen that with several of our patients, especially the difficult ones, it's been possible to keep them connected with the health system. That's really good for us because there's not a system within the hospital that does that. There's a void there, really, and [PASEO] has come to fill it." (Participant-7) Another participant felt that PASEO helped ALWH independently manage healthcare: "[PASEO was] guiding them to be able to do things on their own, because they didn't even have a clue how to get to the hospitals. And now, they've restarted the treatments that they were taking before" (Participant-3). What worked-Personalized accompaniment. Like ALWH, HIV personnel emphasized the benefit of tailoring support to the adolescents' needs, especially when transitioning from paediatric to adult care: ". . . for those who left [pediatric HIV services] to go to the other adult hospitals, [PASEO] has been really important because of the accompaniment provided. I know that each of them was given personalized support, because when you get to the adult hospital, it's different, right? There is no one there to guide you, to support you, nothing." (Participant-3) The tailoring aspect of PASEO was seen to "humanize" ALWH by including non-medical issues: "The most important thing [in PASEO] is that we are seeing the life of a human being-right? -in all its context, not only health, but also the social part, the educational part, [as well]" (Participant-1). Support groups. Though participants spoke positively about PASEO's support groups, one potential issue noted was that ALWH could be exposed to adolescents with undesirable behaviours: "But on the negative side, [in the social support groups, ALWH] probably have access to all kinds of people and could end up falling into risky behaviours" (Participant-4). What did not work or was lacking-Including parents/caregivers in PASEO. No aspect of the intervention elements was noted as faulty; however, one respondent felt that PASEO could be strengthened by including ALWH's parents: Intervention duration. HIV personnel believed that PASEO would benefit from a longer duration, perhaps even years: ". . . I think that clearly a year is pretty short, perhaps as long as it takes [is the ideal amount of time]. We could say that in this most critical time in adolescence, maybe, I don't know, 3 years, or if overdoing it, maybe 5 years. I don't have the answer, but it seems to me like one year is not enough to be able to guarantee long-term continuity of care." (Participant-9) However, the feasibility of extending the intervention if it were financed by the HIV programme was doubted by another participant. Still, even a shorter duration was felt to have benefits: ". . . for the Ministry of Health, I highly doubt that they would want to do it for a year, and I really doubt that they would suddenly accept a full year. They would probably do fewer months, but really, I think that even six months would be enough, and quite important for the patient." (Participant-2) Specific to DOT. DOT (delivered in-person pre-COVID-19 and virtually as "teledot" during COVID-19) garnered differing opinions. Some felt that teledot was a strength and should be included in Peru's HIV Programme, regardless of PASEO: ". . . well, what actually caught my attention was teledot. It was a really good strategy that we also should do, apart from this project. Seeing the experience and good results that you've had, I think we should do it" (Participant-2).
But others emphasized that DOT should be only temporary: "HIV treatment is for life, so thinking about DOT doesn't make much sense, except in a very conjunctural situation. But really, treatment and counselling must be the aim, they must be incorporated into the lifestyle of someone living with HIV, and that's their responsibility." (Participant-9) Regarding COVID- 19

Domain 2-Post-PASEO, opinions and recommendations
Regarding scaling up PASEO, two issues arose: who would implement and finance the intervention. Doubt that the public health system would implement PASEO. Concern was expressed regarding the public health system's ability to implement PASEO; however, this was expressed both as an implementation capacity and budgetary issue: "[Implementing PASEO is] going to depend on several factors, but what is clear is that it can't be [part of the public health system's] services. It must be an external group that intervenes. In what capacity, we'll have to see, and we'll see what the budget will be as well. . . " (Participant-9) Another participant felt that implementation would need to encompass all hospitals that ALWH could transition to: ". . . more than anything we'll have to see the resources, funding, to be able to have staff that do the accompaniment part, because that should be done in practically all the hospitals that care for adolescents and then transition them to adult hospitals." (Participant-3) Finally, a concern arose regarding the potential for lowquality implementation of PASEO and the negative consequences for ALWH: ". . . maybe I'd worry that [the public health system] doesn't know how to [implement PASEO] properly, and there's a lot of attrition; the kids could lose confidence pretty quickly. So, if they do it and do it poorly, people are going to leave. They're going to stop following up and stop taking their pills, stop taking their treatment, you know. And that's a big risk." (Participant-6)

D I S C U S S I O N
A novel CBA intervention supporting ART adherence among ALWH in Lima, Peru was highly acceptable to ALWH and HIV personnel. Among adolescents, tailored accompaniment and social support groups were especially favoured and characterized as emotionally and psychologically transformative.
Notably, even participants engaging less with the intervention found PASEO valuable. Likewise, HIV personnel praised PASEO, citing favourable experiences heard from adolescents. PASEO aimed to improve unsuppressed viremia among ALWH [35]; accordingly, the intervention focused on resolving ART adherence barriers. However, when ALWH spoke about PASEO, responses consistently centred on how each core element made them feel rather than the activity itself. ALWH frequently reported improved self-acceptance as they developed emotional bonds with other ALWH. Though we could not link participants' self-appraisals and mental health status with HIV outcomes, an emerging area of study has begun to elucidate the negative impact of depression in adults with HIV on viral load independent of ART adherence [42]. Future research should explore the association of negative mental health states on viremia among ALWH as a potential element to improve care.
DOT for HIV has yielded mixed findings among adults [43,44], but ALWH found DOT supportive training for independent ART adherence rather than observed verification of medication ingestion; shifting to teledot did not change this viewpoint. The favourable view of HIV teledot corroborates a study among Peruvian adults with HIV reporting perceived psychosocial outcomes as the primary benefit of DOT [45]. In that study, the stress buffer theory-positing that community support mitigates threat perceptions and improves clinical and psychosocial outcomes-may explain PASEO participants' DOT perceptions [45,46]. Further, our findings appear to support the positive impact found in a study of community-based DOT in which youth with HIV experienced reduced depression and increased coping skills [47].
One reported deficit of PASEO was limited interaction with ALWH's parents/caregivers. While PASEO implicitly included ALWH's parents/caregivers, it may benefit from more explicit involvement in adolescents' support network, and research supports involving parents to enhance ALWH's ART adherence [34,48]. However, we note that in our sample of ALWH, over half had lost parent(s) to HIV. Therefore, while PASEO might benefit from a parent/caregiver component, our emphasis on the adolescent appears appropriate.
We wanted to understand differences in perceptions of PASEO between ALWH with early childhood and recent HIV. Practically speaking, most ALWH in Peru with recently acquired HIV also identify as a sexual and/or gender minority (SGM) [49][50][51] and may experience issues distinct from non-SGM and/or ALWH living with HIV from birth [52]. While one participant suggested that separate groups for those with early childhood versus recently acquired HIV could help to share common experiences, overall, ALWH liked hearing experiences different than their own, endorsing the mixed-group approach. Importantly, no SGM reported feeling marginalized. This finding might be explained by the balance between individual CBA tailored to each ALWH's specific needs and the support groups which focused on themes that most ALWH could relate to regardless of their background. From an implementation perspective, forming groups with open membership may be easier than multiple, membership-specific; further research should explore the pros and cons of both approaches.
If PASEO is found to be efficacious in optimizing ALWH's ART adherence, its impact will be constrained unless it is adequately scaled. HIV personnel voiced concerns regarding financing the intervention and had discrepant views on its duration. These findings speak to future research steps for PASEO, especially an economic analysis to understand PASEO's economic viability.
As a small, pilot, qualitative study, our findings are limited to the experiences of the study participants and cannot be generalized. We attempted to recruit a diverse group of adolescents, but only one transgender female participated; future studies must increase SGM participation. Further, we were unable to discuss ALWH's perceptions on viral load changes during PASEO because COVID-19 disrupted viral load testing in Peru, and only baseline results were available [35]. Finally, the near uniformly positive responses from ALWH could be due to social desirability bias; however, this was minimized by collecting data after the intervention ended at the final study contact.

C O N C L U S I O N S
A multicomponent CBA intervention addressing physical, mental, reproductive and psychosocial wellbeing to support ALWH's ART adherence in Peru was highly acceptable. Future research should determine the efficacy and economic impact of the intervention.

C O M P E T I N G I N T E R E S T S
The authors declare that they have no competing interests.

A U T H O R S ' C O N T R I B U T I O N S
MFF conceived the study. SS, LL, MW, KR, AR, LS, JTG and HS designed the intervention, which was coordinated by MW and implemented by AR, LS, RAE, AL and HS. LK, EM, ES and CB provided feedback on intervention design and recruitment. JTG led the qualitative analysis. MW collected qualitative data, which was analysed by JTG, MW and BN. JTG, MW, BN and MFF drafted the manuscript, which was reviewed, edited and approved by all authors.

A C K N O W L E D G E M E N T S
Our gratitude is extended to the adolescents who participated in PASEO, with special thanks to the Socios En Salud Youth Advisory Board members who provided critical feedback on the study. Karah Greene is thanked for technical support on manuscript preparation.

F U N D I N G
This research was entirely supported by the National Institute of Allergy and Infectious Diseases of the National Institutes of Health under award number R21 AI143365.

D ATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.